Palliative Care: What is it? How do I get it?

When talking to medical professionals about your/his care, especially with palliative care, it helps to say how the care will help maintain independence. The patient is an important part of the decision making team, and their voice should he heard. The insurance company is always motivated by what will cost it the least. And staying independent means less costs for them.
What types of care might help with independence? It depends on the diagnosis, for instance, if a patient has had throat/mouth issues and is at risk for losing the ability to swallow, then ongoing speech therapy services may extend the time that swallowing is functional. Even though the goal is not to fix the problem - but therapy could help make eating independently last much longer.
Same goes for pain. If some type of exercise or PT alleviates some of the pain then the patient may be able to move more and stay healthier- less co-morbid health issues, better self-care.
Other care that may reduce health decline and maintain independence: muscle strength, balance, reducing pain to stay active, engaging in social events, maintaining skills needed for a hobby or to cook for oneself. Think like the insurance company - how will the patient’s functioning affect costs over time. Keeping you healthy and independent is much cheaper for them than long term high cost care.

Palliative Care vs Hospice Care
https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care#:~:text=Palliative%20care%20is%20specialized%20medical,to%20cure%20their%20serious%20illness.

Hi Cathy - Can you explain a little more about what you are talking about? Palliative care is different than hospice, and can be accessed before hospice, or during a hiatus such as you are describing.
Here is a pretty good definition, "Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment."
Are you looking for a return to hospice, or would palliative care suit you at this point?
Sue

The problem is with most local Oncologist not referring to Mayo they prefer not to offer pain and other symptom relief! Even if you are diagnosed with metastatic cancer or you are referred to a radiation oncologist for chemo or radiation, go off hospice and can’t get back on hospice til a correct PET scan done !
Lost my trust with medical professionals

In addition to @sueinmn’s recommendation to look for local palliative services, you may also wish to talk to your Mayo pulmonologist and/or cardiologist about palliative care options at Mayo Clinic.

There are some palliative care resources in southern Iowa, but it will depend upon where you live. I don't usually advise Dr. Google, but in this case, you might try this search:
Palliative Care near me [your zip code or nearest medium sized town or city]

Sue

I was recently diagnosed with Pulmonary Sarcoidosis. And, I also have a twisted aorta that is somewhat calcified. I have 100% confidence in Mayo, MN, and love everyone there. Next week, I see a Pulmonary Physician and Cardiovascular Doctor. Along, with more testing. I may be interested in Palliative Care at some point. I am curious about whether I can get it down here in Southeast Iowa. How can I find out more about it?

@alive, Oh, I'm so glad that you found out about Palliative Care. You've had a pretty rough road and I love your sign-in name that celebrates it. Palliative care works very well if and when you need it, but sometimes you have to ask for it. And it also depends on the person helping you the most whether you get the support you want or need.

I think that in this day we all have to look into ourselves for most of the comfort, as you did turning to your faith. Part of the healing process has us doing this, looking to ourselves for strength that we didn't know we had.

Stay well and use your strength if you ever need it for this again! You've done so well!

Hello @baeph Here is some information from Mayo Clinic's website that gives a good description of palliative care.

--Palliative care
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637

How is your husband feeling now? What concerns do you have regarding his treatment?

@baeph, my understanding of palliative cancer, especially for cancer, can be defined as comfort care or helping to manage the side effects of cancer and its treatments for the patient and their family and supporters. Palliative care concentrates of managing symptoms, like pain, depression, nausea, mobility, etc. - anything that affects quality of life. Palliative care is meant to enhance a person's current care by focusing on quality of life for them and their family.

Current care can include patients for whom their cancer is expected to go into remission or is metastatic and everything in between.